Open Letter to Senator Ron Wyden

December 17, 2009 --



Senator Wyden,

I voted for you and I'm very proud of your record and tireless work to reform healthcare insurance for all Americans. You are the real deal.

I urge you not to accept or support the Senate's healthcare bill in its current form.

Without offering an alternative to "for profit" health insurance the bill will fail Oregonians and all Americans. Available statistics show that "For Profit" health insurance is strangling the life out of our country. The reforms proposed in the Senate's bill will help, but without a "not for profit" healthcare alternative they will fall short. At every turn the "for profit" healthcare insurance industry chooses profit over people. Isn’t this antithetical to our American values? The Constitution of the United States begins “We the People…” not “We the Shareholders.”

Senator Wyden, I know firsthand what it is like to be held hostage by the healthcare insurance industry. As a 42 year old dialysis patient and kidney transplant candidate, I live with the financial burdens and pressures of managing a chronic illness through all the perils of our healthcare system. Daily life requires an extraordinary force of will. In fact, I am one of the only 23% of those with kidney failure who works full time in order to maintain my health insurance and get a second chance at life. However, through all my difficulties, I am not the person in need here.

The uninsured, uninsurable and the under-insured need your continued help.

Most of us have moved beyond hoping for a single-payer, non-profit system. However, expanding Medicare to cover more Americans is a brilliant idea. As a person with kidney failure, I am fortunate because I am allowed to enroll in Medicare. Because I work, Medicare is my secondary insurance and serves as a critical fallback that saves my family from desperation and poverty. Though the Medicare system is not perfect, it is superior to any proposed alternatives.

It just makes sense good to build on the Medicare infrastructure that is in place and works today. I urge you not to compromise on this key reform.

I also do what I can to help by advocating for healthcare reform with my blog. You can see this letter to you posted there (http://www.joneseaman.blogspot.com/). Of course my blog has a special focus on kidney disease, dialysis, and organ transplants. I sincerely hope that you are a registered donor and that I can continue to laud your achievements on my blog and support your reelection.

I greatly appreciate your service to Oregon and the United States of America.

Sincerely,
Jon E. Seaman

Why Natalie Cole Sucks!

April 3, 2009


Natalie Cole was on Larry King Live this week discussing her kidney failure and pitching the general public for an organ donation. I was very eager to hear what she had to say. As you know, celebrities can help raise public awareness and build understanding for important social issues. Michael J. Fox has done a superior job for Parkinson's. Lance Armstrong has done an amazing job for Cancer. Natalie had a rare and important opportunity on LKL. Unfortunately, she blew it.

My expectations for the interview were fairly modest; educate folks about kidney disease and explain the need for organ donors. Instead, what we saw was a very narrow personal perspective, a misrepresentation of many facts, and a minimization of the struggle people face on a daily basis when in kidney failure. Here's a little snippet. There's more of the interview in associated clips.



Statements that pissed me off:

• "If I don't get a kidney, I will be fine." WRONG. Dialysis patients live an average of 7 years. Dialysis patients 60+ years live 4 years. She's 59, BTW. Also, 20% of dialysis patients die every year. Dialysis patients are hospitalized an average of twice a year. Dialysis patients are at risk of heart disease, bone disease, anemia, neurological disorders, infection, blood clots etc. Through the interview, she downplays the difficulties of dialysis and ignores the very real risks.


• "Dialysis interrupts your life, but other than that...You read, you eat, watch TV, and nap."" Oh yeah, what a party. It's one of the biggest myths. People think we bound from the dialysis chair feeling like Superman. BULLSHIT. I've seen people puke, get vicious cramps, pass out, scream in pain, code (go into cardiac arrest), and get carted off in an ambulance. I've seen a senile old lady pull the needles from her arm and spurt blood all over the floor. She could have bled out. Fun for everyone. You are stuck in a chair and cannot move for four hours. Most people can only watch t.v. because their brain completely fogs out. The people I see look like zombies, not like vacationing debutantes. BTW, food is forbidden at my clinic because they're worried we could choke to death.


• "Dialysis takes 3 hours and 15 minutes." FOR HER. The time spent on the dialysis machine varies based on remaining function of the kidney, blood volume, body weight etc. The average dialysis time is 4 hours. Many people are on the machine even longer. Often times you have to wait for a machine. It can take 20 minutes to get on the machine and 20 minutes to get disconnected (sometimes more). There's also travel time to and from the center. So most people are looking at a 6 hour + experience three times a week. This is the part time job you never wanted. It's not merely inconvenient. In fact, it's so difficult that only 23% of people on dialysis work regular jobs.


• "I have the healthiest blood on the planet." WRONG. WRONG. WRONG. Dialysis, at its best, is a substitute for 15% of normal kidney function. She also didn't adequately explain that dialysis not only filters toxins from the blood, but also removes excess fluid from the body that your kidneys can no longer get get rid of. For example, in each dialysis treatment they remove over 6 pounds of fluid from my body in the dialysis process. Imagine losing six pounds in such a short span. Most people feel like dog shit after dialysis. All Ms Cole would have to do to understand this is look around the freaking room the next time she's in dialysis.


• "All dialysis facilities are the same." Wrong again. Here's just one example of a hundred of how they can be different. The facility that I go to discards dialyzers (the blood filter) after use. Other facilities clean their dialyzers with bleach and reuse them when the patient comes back for the next treatment.


• "I have been on dialysis in Istanbul, Milan..." Good for her, but Medicare and most insurance companies will not pay your dialysis costs if you go out of the U.S. BTW, dialysis costs close to 12K a week, or nearly 500k a year. She made no mention of the costs.


• She poo-pooed the National Kidney Foundation for focusing on "prevention." That's just stupid. Prevention can keep most of the 26 million people with kidney disease from progressing to kidney failure.


• "They really don't know what causes kidney failure or how kidneys work." That's absolute nonsense. The kidneys are one one of the best understood organs.

I apologize. I realize this has been a rant. I don't condemn Natalie Cole for how she got kidney failure, many would and do. I don't have an issue with her using celebrity to solicit an organ donor. I don't begrudge her that. Larry King held up a sheaf of people who sent email that they were willing to get tested. I think that's wonderful.

What I don't like is that she was poorly informed and a poor advocate for the rest of us. And that's why Natalie Cole sucks.

If you are interested in learning more about organ donation, please click the graphic above or visit http://www.donatelife.net/.

Anniversary

March 26, 2009

Around this time last year, I returned home from the hospital after living through kidney failure. In retrospect, I shouldn't have been surprised. In 1987, the nephrologists told me I had 20% function in each kidney and estimated 2 years until kidney failure. I was 19 years old then and the diagnosis did a Rock 'Em Sock 'Em Robot punch to my skull. The news knocked my concept of "self" into a mist that floated outside my body. I felt very temporary about this world and my prospects on it.

It took 10 years to regain some semblance of consciousness. Thankfully, I have good friends and a supportive family. I avoided any truly destructive behavior, was smart enough to always take my high blood pressure meds and stayed away from known kidney killers. I learned to cope with or ignore the exhaustion, headaches, and gout attacks. I directed my limited energy into work and avoided thinking about the future because keeping busy and good old-fashioned denial seemed to be my best coping strategies. 2 years stretched to 22.

Denial is a mule that can pack a lot of weight. A few years ago, I noticed that I wasn't performing as well at work. I had a hard time having the impact and driving the kind of change that had been so satisfying. I chalked it up to burnout. I contemplated changing careers. I thought that maybe I was depressed and considered anti-depressants and counseling. I decided I was far too fat and got in shape and lost a ton of weight. I went on a half-hearted search for an artistic outlet to replace acting and writing that were so important to me when I was young. Finally, I broke my vow never to marry and even invested in a dog. That's a ton of good positive weight for the mule. It felt good. It still feels good. I was living.

Unfortunately, my ass continued to drag (so to speak). I could barely get out bed. Honestly, I thought it was mental. It seems ridiculous now, but I refused to believe or acknowledge it could be kidney disease. It wasn't until my hands swelled to size of surgical balloons and my face was yellow and puffy with fluid that I looked in the mirror and realized, "oh shit, I'm in kidney failure."

So, a year ago after an emergency doctor appointment, I was hospitalized. Just in time, by the way. My blood pressure was something like 60/40 when I was admitted. Today, I have been on life saving dialysis for one year. I'm not celebrating with a cake and candles, but perhaps I should. Anniversaries are about counting stuff, so here are the numbers: 1 year, that's 156 dialysis treatments @ 4 hours a pop on the machine for a total of 624 hours, or 26 full days. I have also been on the kidney transplant list for six months with probably another 2 years to go.


You know what? I have never been happier. Being stuck in a chair has given me the time to write that I could never seem to find. It's slow going because my brain fuzzes out, but I already have 75 poems to my name and a finished book manuscript. I also know what truly matters to me. I have wonderful friends, a loving wife and an insane dog.

Best of all, I no longer feel temporary about myself.

Bad Post

February 10, 2009

So, it's been a few weeks since I blogged. I apologize for my absence. My goal to blog twice a week has turned into once a week. Unfortunately, I haven't even kept that commitment. I've been focused on work and retaining my job in this ludicrously harsh economy. You see, the salary is nice and necessary but the health insurance is essential. Without health insurance, I would be completely broke within a few months.

Let me dimensionalize this for you. Life sustaining dialysis costs over $10K a week and in the past year, I've rolled up about $800K in medical costs when you include surgeries and hospitalizations. Most dialysis patients average two hospitalizations every year. So, this is pretty common for my situation and for the foreseeable future. When you routinely rip open bills that have a $60K bottom line that say "not covered," well...you shit yourself. Then you spend hours on the phone with your insurance company who routinely tests your mettle and will to live with a ticker tape parade's worth of bureaucratic paperwork. It's a freaking part time job keeping them paying, getting approval for meds, etc.

Here's the secret. Insurance companies don't make it easy for you, not because they're grossly incompetent, as is the widely held view. No, it is because they would prefer that you die. At a minimum, they want you to give up trying to get them to reimburse. At best, they want to pass the expense along to someone else, preferably the government, your employer, the doctor, the medical facility, and especially you. Why aren't health insurance companies more efficient? Because there is no monetary incentive in it. There's no profit in streamlining the process. Make no mistake, the vast majority of health insurance companies are profitable.

Why do I tell you this? Why tell you that I'm working for the health insurance, how I'd be completely screwed without it, and then bash it like an electronics store window in a riot? It's simple; the system is broken and must change to benefit ALL of us. I don't like being a drain on the medical system and the economy, but I know something you most likely don't. It's only a matter of time and circumstance before you end up in my shoes, or worse, in some uninsured person's shoes. It's a part of the human condition, living a mortal life. Despite what you tell yourself, you will grow old (if you’re lucky), suffer an unspecified amount and die. It's all much closer than you think.

I urge you to hold President Obama and your local senators and representatives accountable for their campaign promises. The medical system must change. Your life and dignity depend on it.

Poet or Patient? Curious Readers Want to Know.

December 4, 2008

The short answer is poet, first and always. However, it took this nasty confrontation with my mortality to spur me to action.

Today I do want to write about being a patient. Many kind folks have emailed me or signed up for the newsletter. The question folks ask repeatedly is "Why did your kidneys fail?" As you can imagine, this is a sensitive topic. Most people are genuinely curious, but sometimes it feels like there is an accusation hiding beneath the polite layers of inquiry. In fact, a few people have even bluntly asked, "What did you do to make your kidneys fail?"

First, I assure you that my kidneys did not fail because of some moral weakness or divine retribution. The damage did not come from alcohol addiction or drug abuse, drinking the water in third world countries, unprotected sex, over the counter pain medication or too many cups of coffee. Lastly, my kidneys did not fail because I struggled with obesity for a time. However, that word "failure" is powerful. Failure is personal and demands introspection and accountability. It carries a heavy aura and acrid bite. Sometime I feel its stench on me. How do I explain this? I have asked myself in quiet moments, "Am I defective in some crucial core way that makes me less worthy of life than someone else?" and "Do I deserve this?"

Here is my personal story, the short version. From the time I was a baby until I was three, I had recurring kidney infections. They discovered my ureters, the tubes that connect your kidneys to your bladder, were defective. This caused urine to reflux (backflow) into my kidneys. So, I had an operation to reimplant my ureters. The surgery worked - no more infections.

The rest of my childhood was healthy, as evidenced by my 6'8" frame and active mind and body. Then in college, at the age of 19, as a joke, I stuck my arm into a blood pressure cuff. My blood pressure was abnormally high. After a month of tests, we found that significant kidney damage was causing the high blood pressure (and vice-versa). This damage stemmed from the reflux I experienced as a small child. Unfortunately, kidney damage is a downhill race. The doctors told me that I would have 2 years until kidney failure. This was in 1986. I cannot explain how this affected me. You will have to read some of my poetry for insight. Suffice to say I felt very "temporary" about myself. This reality colored every aspect of my life.

How does this story end? My kidneys did fail...in March of 2008, beating the estimate by 20 years. You see, I took charge of my life at 19 and went on high blood pressure medication. I followed a diet based on the best medical evidence at the time. I monitored my condition with doctors regularly.

Now when I look deep inside and ask myself if I am a "failure," I smile and say, "Hell no!" I am a success story.